Great News!

Trevor had his post-op appointment today and everything is great! The tumor/mass they found was an abnormality that he was probably born with. While the brain nerves were forming a few of them got mixed up and formed a cluster that started growing, it has a long name, but that doesn't really matter. What matters is that they got it all and the tests came back clean.

Since the surgery Trevor seems more focused, sharper then he was. He's using words that he's never used before in a normal conversation. The doc said that with the seizures he was having most likely was the reason for having a hard time with some of his school work, concentration and comprehension. He said that will definately improve.

Trevor will probably have alot of little bumps in the road, but for now he is doing well, therefore I probably will not be updating after this. If there ends up being some big achievements, I will post again, otherwise thanks to you all for being so supportive and all of the nice letters and emails.

Thanks!
Dawn

Tuesday... not much goin on

Just wanted to update everyone, Trev is doing well, still sleeping alot! He is now sitting down doing homework, that HE asked for. Tomorrow we go to the doctor for the post op appointment, I believe they should have some answers about the "thing" they pulled out of his head, I'll update then.

Friday

There isnt too much to report, Trevor is doing better then I had expected, he has actually asked me to get him some homework? Did they add something while doing the surgery? He still gets tired pretty easily, other then that, it seems pretty normal around here.

Pictures of the journey

Some of you may feel uncomfortable about looking at the pictures, there is nothing gross, just looking is sometimes hard.



Getting ready for surgery












After surgery in the ICU













Day 2 he got out of the icu and into the patient recovery rooms.












Day 3, he got his "turbin" off.
















The day after we got home his eye started swelling and closing.











His incision













Close up view of incision

More Updates

Trevor hasn't been doing that great today. He cant keep anything down, he is still in alot of pain but he will give you a smile if you look at him.

Two days before his surgery I took the kids to get their pictures taken, here is the link ... make sure you turn up your volume for this... it is pretty funny.

Tawnie and Trevor's music video

Updates...

Trevor is doing well at home, he is sleeping ALOT! His right eye, the same side of his surgery, is really swollen and black and blue, like he got into a fight and lost.

I hope to post pictures soon from the day of surgery until now, just to keep track of his healing time, more for other people online looking for information on children that have had or need brain surgery, I know I couldn't find anything online when I wanted to know more.

We've had lots of visitors and gifts and I'd just like to thank you all for that.

We're HOME!

Can you believe it? Trevor is doing so good they thought he could go home, I'm a little nervous though. He is walking fine, just a little wobbly still, he is very alert and back to his smart ass self! Today he got on the computer at the hospital to play a game, he played for about 10 minutes and then started to slow down and he realized how tired he was. I guess this will happen for awhile. He's happy to be home though, we told him he didn't have to do his chores tonight but tomorrow was another story. :) Noooo, we'll wait on that.

Thanks again everyone for all of the great posts, emails and phone calls.

Today

Trevor wants to go home... he thinks he's ready but has to wait at least another day or 2. He was finally able to walk to the bathroom in the middle of the night, he didnt like the handheld urinal thing. He's joking around with the nurses and looking great. They took off his "turbin" today, the scar is bigger then i thought it would be. He wanted to take the "turbin" home, but then realized that it was a wrap and it doesnt come off like a hat but gets unraveled.

He's doing really well, alot better then i thought he would be doing so soon.

He's obviously feeling better...

He is awake on and off today, he smiling and mumbling a little bit. He did however show me that he is back... the nurse came in to check his vitals and I walked out for a bit, when I came back he had a smirk on his face and said, "she put my hand on her boob". I am thinking she must have been taking his blood pressure?! Anyways, that made him happy.

He no longer is in icu, he's in a regular room now, now we just need him to get up at least into a chair... I'll keep you all posted.

Long Night!

Okay, I will give you all the run down. Like I said yesterday, some of you questioned, the thing they took out, they couldn't get to the other remnants of it because that would have caused major problems in the brain. They got the core of the area that the seizures were actually stemming from. That is all GREAT!

After surgery yesterday, Trevor had alot of pain so they gave him morphine and then because he was yanking at his head and I.V.'s they restrained his arms and gave him an antianxiety pill, they then gave him some steroids for the inflammation, he then broke out in a rash, so they gave him Benadryl. Needless to say, they spent the rest of the day and all night checking on him trying to wake him up. They were suppose to be giving him Neuro exams but couldn't because he was sleeping. He would move around, squeeze fingers and move his shoulders, but he wouldn't open his eyes, and that was the main thing they wanted.

By this morning he was somewhat awake, the nurse was talking to him and asked if he had a headache, Trevors exact word was, "DUH". The nurse laughed and I knew Trevor was okay, that's my boy!

Today they are going to try to make him eat on his own, they'll have to take out that catheter too, God knows I wont be there when they do that! He can then get out of the ICU.

You all have been so great for all of the emails, and voicemails, and I am real sorry that I couldn't have updated more yesterday, it was a whirl wind around here. But, everything is going good right now.

xoxo

Update

Trevor is out of surgery, I just saw him, he seems to be doing fine, he is sleeping but yet in alot of pain, that makes his blood pressure go way up, so they are just trying to manage his pain right now. Besides being puffy, he looks to be okay.

The surgery went great! They got most of the "thing" out. They are not quite sure what it is, its the cross between a tumor and an abnormality. They are sending it to pathology and we should know for sure within 2 weeks. Other then all of that, they said that he didnt need any blood transfusion, and the electrodes that they put on his head to track seizures... didnt show any movement after the "thingy" was removed, that is GREAT! Big chance of no seizures! This has been a great thing, I will keep you all posted, I am staying with him tonight.

Waiting...

We are still waiting to hear from the surgeons, he went in okay, he was definately nervous, bighting his lip, hands a little shaky and being goofy. They will be actually having the surgery for at least 3 hours and the other 2 will be with them prepping him for surgery, after surgery prep, etc.

We're just waiting.

Today's the day!

Thanks to all of you that called last night and left messages on my voicemail, it took me about 20 minutes to listen to all of them.. :)

Believe it or not, we're not really nervous this morning, maybe it's because we're so tired! Trevor's still sleep, poor kid cant even brush his teeth this morning, ewwww, he cant even have a sip of water, and we went out last night and had really salty food! Maybe I'll drink out of my water bottle in the car and make the "mmmmmmm, this takes good" comment, :) No, I wouldn't do that.

Like I have said before, I will update this blog throughout the day. We should be hearing about updates throughout the surgery, it will take about 5 hours.

Thanks again everyone.

Perfection

When I gave birth, I had the most perfect child, 10 fingers, 10 toes, a perfectly shaped head… the head that you feel with your face to see if there’s a fever, the head that you kiss when they’re sleeping, the same head that you kiss when they bump it on the coffee table, knowing that this body grew inside of you just how it is now, I look at him knowing that he is exactly the way that I gave birth to him, just a little bigger. :)

Knowing that these doctors are going to be sawing through this perfect skull really bothers me. Knowing that after the surgery his head won’t be the same, not the perfection that it used to be. It will no longer be untouched. I think as a mother that I have a right to feel this way. Wouldn’t it bother you just a little too?

The Brain Bash!

Trevor had 3 friends over for his brain bash.. they polished off all of the pizza, pop and cake within a matter of hours. They had a good time, Trevor acted as if it were any other day. His friends will mention his surgery coming up and Trev just brushes it off. It's interesting, you'd think anyone that is having a major surgery might use it for attention or a crutch and yet, Trevor would rather not talk about it.

Trevor's last day of school is tomorrow, he has a pre-op appointment on Wednesday and then Thursday's the big day!

Goal!

We had Trevor's very last game yesterday, it was kind of sad knowing that he had to end the soccer season early and that we dont know if he'll ever be able to play again... there is that chance. That kid got a goal! How much more would you ever want for him on his last game? He was so proud. To watch all of the kids run around yelling and screaming and slapping hands with Trev is more then i expected yesterday! It was a great day! Bitter sweet really.

His eyes

His eyes are healthy! With the new prescription they can get him to 20/20 vision, now… why is he having eye problems? That’s a good question, I have been told that it could be the medication that he’s on for his seizures. So, after surgery he may still have the vision problem because he will have to remain on the medication for at least a year after surgery. What did this appointment tell us today? I dunno. The doctor told me that his eyes were great, but she didn’t mention the tumor, does that mean that the tumor isn’t causing the vision problem? When I asked about it, she said that any other questions I needed to talk to the neuro-specialist. What? She doesn’t think he’ll even lose any peripheral vision after surgery, we were told that was a big possibility, so that’s good.

At least they have a starting point to go with so that after surgery they can compare results after testing again. I’m not saying she wasn’t a good doctor, I guess that she is only specialized in eyes and cant talk about anything else… that does make sense, but come on.

Did you know that on all of the paperwork for all the different specialists at the hospital they ask you if you have a dog at home, if so, what breed… do you have a wood burning stove at home… I don’t know about you, but I think those questions are kind of bizarre, I can kind of understand the wood burning stove, maybe the wood could cause some kind of health issue, but the breed of your dog? What’s the difference between a pug and a lab? Do they have different hair follicles that would make a difference in your childs health?

Anyway, just another day at the Pontious household

9 days until surgery

Trevor is doing well, he was a little quiet today, we got his haircut and we discussed his scar that's coming, he hopes it looks cool, I told him that we'll have to get him a tattoo on the scar that says, "i love mom", he said that wasnt going to happen. He did finally admit that he was starting to get scared. This is the first time I've heard this, now I'm nervous.

We are keeping really busy around here with all of the doctor's appointments and school stuff. We have an opthamologist appointment tomorrow, with the blindness that comes and goes in his right eye, they want to see how the surgery will affect that eye, if at all.

We're getting there, it's gonna be a long road, but we're ready.

Soccer

Today Trevor had soccer, no seizures. YAAA! This week during soccer practice he had the longest seizure that he's ever had. I used to get really upset and anxious after he has had a seizure, but knowing he's going to be having his surgery, I felt very relaxed and confident. During his game this time, he didn't even go blind in his eye. To be a normal kid right now is very important to us, for him. He's such a trooper, but, we are no longer allowed to call his party a "brain party", he has just informed me that that hurts his feelings, it is just called a party, ... party pooper.

Today he played awesome, he was involved in 2 of the goals. I hope he will be able to play soccer again. The percentage of him losing the movement in the left side of his body is low, but there is always a chance.

Today I received another statement from my insurance, so far the bills have added up to be about 60 grand, we don't have to pay that of course, thank God for insurance, but I have been told that the surgery itself can be up to 600,000.00, can you imagine?

I always look back at pictures of Trevor before he started having seizures and it has always made me sad when I see those pictures and think, "that's when he was normal", now I wonder if I'll be doing that again after his surgery, looking back at pictures that I took today, will I think that we were really lucky that he only had seizures? I think the surgery is starting to cross my mind, this week will be his last full week of school, he's in normal classes right now, I wonder if he'll have to be in special ed classes afterwards?

That's it for today.

13 days before surgery

It seems to be pretty normal around the house, homework, chores, the kids arguing with us. We don't talk about the surgery much, it doesn't seem real yet. We have planned a "brain" party for Trevor to get together with his friends on the Saturday the 25th, eat pizza, play xbox and enjoy the cake that I will be making for him with a plastic skull on top for decoration.

Trevor and I discussed getting a fake brain, but after seeing the gorey brains at the halloween store, he decided to pick out a skull instead. It may seem sick to have a party with a skull on top of a cake, but, that's how we deal with stuff, you have to make light of it, what else are you going to do? Cry about it? I think the crying will come later naturally, let's take a breath now and relax.